It’s not all sugar plums and dancing fairies even when bodily pain is minimized to any degree. Especially in the injury that led to RSD/CRPS and the devastating consequences that just hasn’t let me forget. It has nothing to do with the loss of work, inspirations, or goals that might have been. The regret has remained heavy because of the manipulation involved in a decision, one I would have never considered had I not been told from health care providers that doing so would prevent a detrimental outcome and allow possibility in recovering. The choice was for the ones I already had. I never got better and as a result I not only felt deceived but also used to reduce cost and care for both of us.
I’m trying to tell myself this is what it was for. Today! It just took 15 years to get there. I’ve already told me how stupid I was for believing in others when I knew better and that led to future distrust. I had already overcome, mostly, other trust issues and there I learned to build my wall so much stronger than it was before.
So here I am still trying to clean up my own mess from the first few months of this year and its aftermath that’s only 7 months old that I can’t even throw away as garbage yet because it’s still active with a new appointment in just a couple of days.
Every day that I get better is another day that I ask myself why. What was it all for?
I suppose I’ll just have to wait and see.
I hear ya. Those of us having to deal with health issues and have to trust what doctor’s tell us or what they don’t tell us, is a very sad, depressing and frustrating road to have to walk, only to find out years later, we had been led astray because of the cost of medical care and the insurance industry that is only interested in money and nothing else. I’ve been advocating for myself for many years, now. Had I known, in the beginning that I would be the one to have to figure everything out, to be my own advocate, I may not be in this current condition today. I trusted because I was young and didn’t know better. I believed everything I was told, until one diagnosis led to two. Then two led to three, and so forth……………………………..The list is now so long that I can’t even remember all of my diagnoses without them being written down on paper. Same with the long list of medications I’ve been put on, which are partly to blame for some of the problems I have to this day. I have no doubt about that!
I wish you the best. I know there is nothing I can say or do to make your situation any better. Just know you aren’t alone and that someone else out here understands and cares. Take care. XX
How this has hit my life exactly on the head..rsd is so unbelieveably a unknown; you believe all those years ago that the doctor (s) know how to help survive this awful disease; then 10 yrs. down the road after the sms has been implanted, removed after making things worse; only for it itself to leave more damage done…the medications are now to blame for the condition of the my kidneys & liver. No one will admit that the combination of them all – not just one is to blame..so I have to pull myself off nearly everything I can possibly live without..I can’t live without my liver – can’t even believe how painful dialysis would be if I continue to take medications that will eventually destroy either or both. Depression I fight on my own now through prayer; God knows I should have never thought they would help me any better than I finally am now; but only for how long? The pain is unbelieveable, some pain med has been removed & another replaced…with what end will this be? I am trying to work on depending on myself and not pain management doctor that just wants to write yet another script; a psychiatrist that is angry that I’m concerned with taking ant-depressants that are destroying internal organs…I know they are trying to help me with my quality of life..I understand but would they just listen…just listen to me when I say that I don’t think this or that med was/is no longer a good idea? Instead of shrugging me off until I land in the hospital and “oh no, you got dehydrated all by yourself” but “we won’t release you until your pain med w/Tylenol is removed”? Make you feel like a pill popper when they explain (which what a time to do this when you can’t think straight; not only are you sick but you’re brain is so fuzzy, you hurt beyond words); that these pain meds build up in your system..that I, me, should’ve known this…even tho I didn’t nearly take the extent of the allowed med daily? Now. Here I am – been thru so many tests to make sure there isn’t a hidden problem somewhere that’s been overlooked; that in my gut; that it was all the medications combined that put me in the hospital…that months b4 I told dr’s I wasn’t feeling right; something was wrong? What is to become of us> who try to deal w/this pain…constant & only then even worse if stressed or the weather changes or for no reason at all? No one knows. That in itself has to be THE worse part. We’re virtually on our own. At our risk.